The past few weeks have been full. I should probably break these down into separate posts, and may in the future, but for now I just want to let everyone know what happened.
As I've mentioned, TJ is on the spectrum (ASD). The pain and cognitive effects of chemotherapy push him towards the violent side of that spectrum. Two weeks ago he got angry at his iPad and chewed through the glass, swallowing some. This ended up with us in the hospital because his platelet counts were low enough that he may not have been able to clot efectively if he had internal cuts.
While in the hospital, they recommended a platelet transfusion to bring those specific numbers up. This was his second, and with no complications previosly we went ahead with it.
About 5 minutes in hives began on TJ's trunk. I alerted the nurse, and she immediately stopped the transfusion and notified the desk so they could call the Doctor. In the time it took her to do that his entire trunk turned into one large hive and he began having difficulty breathing.
When the Doctor arrived he called for the epipen kit, and before I knew it we had two nurses, four Doctors (including the residents there that night), and a couple of Corspman. Oxygen masks were out and blood saturation was falling to around 90.
If you've never seen an epipen administered, they are simple. Dial in the dose, press against the thigh, and hold it until it gives the full dose you dialed. The effects were immediate and dramatic. His swelling went down and he could breathe easily again. He went from screaming about the needle in his thigh and the frustration of not breathing to wide open eyes and deep breaths in the space of maybe 5 seconds.
They administered another antihistamine and let him rest for a while, then a few hours later we gave him whole blood with no ill effects. I was wound up the entire time until I finally just passed out holding him around the end of the whole blood transfusion.
He ended up being released the next day in the afternoon, and he passed the glass pieces with no ill effects over the next day or so. The headline picture is TJ playing in the ward while we waited for our discharge papers. He wanted to try the arcade machine, which required a chair, so he dragged this halfway across the ward to the amusement of everyone there.
The next week we had some blood work to run, and requested a refill of his weekend antibiotics. Due to his suppressed immune system every weekend he takes a large dose of antibiotics to prevent a specific type of pnuemonia that can crop up very easily. I noted that the pills looked slightly different, but the label was correct and I decided I would check them later; they've changed pill suppliers on us before so it wouldn't have been the first time.
When I looked them up at home the next day, before we gave him one, they weren't what the label said. They were the correct drug, but twice the stated dose. I went to the hospital pharmacy that night and asked them to verify, which they did. They then filled the correct prescription, took my name and number, and told me their Supervisor would call me. On Monday both my son's Oncologist and the Pharmacy Supervisor filed a safety report, triggering an investigation. I don't know what the outcome will be, but take this as a lesson: ALWAYS be your own advocate, and know what you are taking.
Yesterday we had our first chemo in a while, as TJ has not made counts and needed a rest. He wasn't happy with the fact he was getting the drugs again, and I got a pretty hard bite on my arm along with scratches on my face, etc. I can't really blame him, from what I understand those drugs feel similar to putting fire into your veins and bones. Today he's pale and tired, but generally in a good mood. He never seems to hold it against me, for which I'm thankful.
In good news, I was granted humanitarian orders by the Navy, so for the next twelve months I will be staying where I am with the primary duty of taking care of my family. I don't know what lies beyond those twelve months, I will have some say but the Navy will have the final say on where I go and when I retire. I hit 20 years Active Duty tomorrow, so at least it will be retirement and not just separation. That said, I have to honestly say that the Navy has been nothing if not supportive during all of this. For all that they've asked of me in the past, they are paying it back now. I have no idea how we would have coped without that support. I know different commands can have different outcomes, but my command (HSC-3) has been beyond exemplary. At least some of the credit for my family's well-being, and my son's continued health, is the direct result of their willingness to just help and support me and my family.